Side effects after Incivek is over?

[taccs4]

I am about to begin week 8. I was just curious to see if any of you have already wrapped up your 12 weeks of Incivek. If so, did your side effects get any better? Since I have to treat 48 weeks I have been counting down the days until the Incivek is over and hoping that things will get a little easier once this part is over. Thanks!

[readyrider53]

Sorry i forgot to mention i itch all the time and am out of breath too. I can only do a small portion of what i used to do. I will be glad when it is over too.

[readyrider53]

I am finishing week 11 of Incivek and have had a number of side affects. I got a rash right away but found that taking a cooler shower helped and using Eucerin cream on my feet did too. In the last couple weeks i have had bad heartburn and had to eat as bland as possible. This week i have begun to get sores in my mouth and with wearing a partial it is not good. The Interferon shot makes my joints hurt and i guess it will the whole time as it has so far. I am glad i have only one more week of Incivek as i am tired of eating 20 grams of fat at each meal. Yuck. The really good thing is after four weeks the Doctor did a panel and checked the viral load and it could not find any trace of the virus in my system. At least there is something good from feeling so lousy.

[muncle]

I am on the triple therapy now for 9 weeks. I itch sometimes, I have absolutely no energy. I am out of breath if I walk up the slightest incline! Is this normal? I can' wait to be off of the Incivek.

[Idyllic]

*´★☆ ¸¸.•*¨*•*♦¸.•*´Oy I just noticed how long this thread is. I encourage you to repost your question. That you might get more responses tapered to your particular situation and what you asked.*´★☆ ¸¸.•*¨*•*♦¸.•*´

[Idyllic]

I haven't gone over my blood work with my GI yet so I have NO idea what my levels are
_______________

If I were you I would definitely ask! The results of your 4 week PCR (as well as your particular circumstances ) could determine how long you treat. 'With Incivek it could be 24 or 48 weeks.

Now is the time to learn what you can rather than hoping your doctor's office will be proactive and nip every side effect in the bud before it snowballs. Actually based on what you have said it does sound like the sides you mentioned have been addressed so... I too was stunned the first time I was told to take Tylenol on my shot days. However it is a frequent recommendation. As is Zofran for nausea.

Feeling nauseous all the time can put a damper on everything. I was very sick the first two weeks of Incivek and not feeling very hopeful since the nausea was intense. Fortunately the nausea subsided on its own (I guess) and after that it was pretty much keeping an eye on my labs, getting the 20 grams of fat/dose and trying to stay active ..or healthy since eating that much fat really messed with my head in the beginning.

If you are not doing so already start asking for copies of your labs and reports if you had a biopsy. One value to keep an eye on in future is your haemoglobin. and whether it becomes less than or equal to 10 g/dL.

There are lots of good threads on here and all kinds of support. You are not alone :)

[pooh55811]

Welcome to the forum.

I am not going to comment on the marijuana because I did not use it during treatment. Some did use it and perhaps they will comment.

"I'm on week 8 or 9 of my shot tomorrow and seem to be feeling ALL of the symptoms! I'm exhausted, anemic, itchy all over, nauseated and now my body and joints ache "
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These are all very common side effects from the drugs you are on Interferon, Ribavirin, and Incivek). Some of them come and go and others tend to stick around during treatment. I found I felt much better after I finished the Incivek.

"As for my aches and pains they said Tylenol which just seems wrong to me?"
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Tylenol is safe to take during treatment as long as you don't take too much. Most doctors say 2000 mg total for one day in divided doses. Some say 1000 mg total for 1 day in divided doses. I did take Tylenol 325 mg just before my injection and about an hour or so after the injection (I did the injections in the evening). I usually took another 325 mg Tylenol the following am. In addition, I took Tylenol as needed for for pain, mostly for headaches. An ice pack works pretty well for headaches and I slept with one of those Gel cold packs in the bed with me so I could always just reach over and put it on my forehead at night.

"Am taking Zofran for nausea which seems to be helping."
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I used Zofran also and it worked well.

"Besides the side effects eating 20 grams of fat has proven to be difficult so I drink organic tea with  enough 1/2 & 1/2 in It and this is working for me so far"
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You really should eat solid food. The tea and 1/2 and 1/2 are fine, but you should eat solid food with it. There are only 3 grams of fat in 2 tablespoons of half and half. You need at least 20 grams of fat and it needs to be taken within 30 minutes BEFORE taking the Incivek. So you would have to take 14 Tablespoons of half and half to get 21 grams of fat each time you are going to take the Incivek.  I know eating is difficult when you have no appetite and are somewhat nauseated. I ate a lot of Greek Gods Yogurt because it is high in fat. It tastes very creamy and somewhat sweet, like cream or pudding. If I ate the Greek Gods Yogurt before taking the Incivek, I also ate some toast with butter or something else that was solid, like a few pieces of organic rye crisp. Brie cheese also has a lot of fat and it goes down easy. So does cream cheese. Just read the labels for the amounts.


"How should I take Incivek?"

"Take Incivek exactly as prescribed by your doctor.  .....

The usual dose of Incivek is 2 tablets taken 3 times per day, every 7 to 9 hours. Follow your doctor's instructions.

Take Incivek within 30 minutes after eating a meal or snack that contains about 20 grams of fat. Always take Incivek with food. Examples of snacks that contain about 20 grams of fat include: A bagel and cream cheese, 3 tablespoons of peanut butter, 2 ounces of American or cheddar "

http://www.drugs.com/incivek.html


Hang in there. Treatment is no picnic but it is doable. Post here is you get side effects. We have a lot of remedies. Best of luck.

[Nicola75]

I'm on week 8 or 9 of my shot tomorrow and seem to be feeling ALL of the symptoms! I'm exhausted, anemic, itchy all over, nauseated and now my body and joints ache :(, I haven't gone over my blood work with my GI yet so I have NO idea what my levels are but one of the ladies in my GI's office did some research for me on why marijuana is contraindicated and she called the University of Colorado and it seems mainly that they don't do many tests on it because it's illegal but that you may feel the effects stronger, I said this is a problem how? It seems to me that the benefits outweigh the cons but they won't even give me Marinol (legal in FL). As for my aches and pains they said Tylenol which just seems wrong to me? Am taking Zofran for nausea which seems to be helping. Besides the side effects eating 20 grams of fat has proven to be difficult so I drink organic tea with  enough 1/2 & 1/2 in It and this is working for me so far.....ANY feedback would be MUCH appreciated and I will continue to offer my help! Cheers :)

[bjoles]

Does any body know the downside if you must stop treatment after you have finished incivek.I was "undetectable" after 12 weeks follow up but the effect on my blood seems to be taking a long time to rebound. After 4th transfusion (12 units) in 6 weeks, white count, hemoglobin, red cells, and platelets all low. I'm 17 weeks into the treatment. What if I have to stop now?

[Dee1956]

I am very glad to hear your rash is between mild and moderate.  Still a miserable feeling.  I hope your doctor was able to help you

[Duane1963]

Thanks for all your help after looking at that link you posted, I can tell that my rash is in between a mild and moderate rash, and see my Dr. Monday it itches but with the eczema that I have I guess this can be expected, I have used a oatmeal paste and it helps dry it up, thanks and god bless you all

[Dee1956]

Hi there, do you have medication for the rash?  Many of us were given prescriptions, tried benedryl, cold cloths, oatmeal baths, etc
Because this is an older thread you may want to go to the top of this and click on post a question.  It doesn't have to be a question however you will get a lot more responses.
Please ask any questions you may have, there are many many wonderful people on here who will share their experience and tips for side effects with you
Best of luck

[pooh55811]

Welcome to the forum.

If you are not already seeing a dermatologist, please get an urgent/emergent appointment with one. Perhaps your doctor can refer you to one so you can be seen ASAP, like tomorrow. Incivek can cause severe rashes in people and they can cause treatment to be terminated and/or can be life threatening. You said you are blistering. You need to be treated ASAP, right away, by a dermatologist who will prescribe oral antihistamines for you and topical steroid ointments and creams for you. Over the counter medications are not going to be enough to clear up a red blistery rash.

I used Hydroxyzine 50 mg oral every 6 hours
Fluocinonide Ointment on my body
Hydrocortisone Valerate on my face
Clobetesol Solution on my scalp

These are all prescriptions. Over the counter meds were useless and did nothing for me.

Please see a dermatologist ASAP so that your treatment is not jeopardized and so that your health is not jeopardized.

Here is a link to some photos and some information about the Incivek rash.
It also gives you the clear warnings.

http://gitract.mngastro.com/mngi.nsf/patient_education/324B138CFD286259862578B000766281/$File/Incivek_Rash.pdf

Best of luck.

[Duane1963]

Hello all this is my second stab at treatment but first with triple therapy, I am on week 8 of incivek and the rash is insane itchy red and blistery on my arms and legs I can say that this time around is no cake walk but easier then the first time , I believe its my mind set , this time I want to beat this, viral count was negative at 4 weeks now I just got to get past these last 4 weeks, Thanks all for sharing.

[hope1315]

good evening eb!this thread is sooo long and i cant read eth.i would like to ask if anybody knows what are the treatments for genotype 1 available in the market so far.does anybody know when was the first treatment ever avalaible for hep c?my sister was treated with interferon back in 04 and had terrible side effects but from what ive been reading the triple treatment with incivek (is this the latest treatment avalaible for geno 1?) must have worse side effects .is this true?and what percentage of cure does it have?thanx in advance for any info

[snowy052]

I will be starting week #8 of incivek, I have mouth sores my toung hurts I was wondering if you or any one else has had this problem

[dsk954]

I am off Incivek tmorrow 12/20/12.  Can't wait to feel a little back to normal.  I hope it leaves my system quickly.

[Walkingshadow]

I am about to finish my 12th week of Incivek. I am genotype 1A, initial titer 1.5 million copies. I was undetectable at 4 weeks and again at about 8 or 10 weeks, so I have an "RVR" (rapid viral response), thank God. First few weeks, rectal symptoms were horrible (very sharp pains, bleeding, etc), but thankfully they really subsided a lot after that. Then all the other side effects began to dominate. Hemoglobin dropped to about 8, low WBC and platelet counts, tired all the time, wacko thoughts/depression/anger/mood swings, couldn't exercise at the gym anymore, couldn't sleep at night, etc. My doctor gave me something to help me sleep, and that helped a LOT. But, fatigue got progressively worse, and just about every day I have to lapse into a very deep sleep for a few hours. I guess I probably sleep a total of about 10 hours a day now (normal for me is about 8). I am SO sick of the high-fat diet. Looking forward to feeling a whole lot better in a week or two (hopefully); my last day on Incivek is 4 days from now. One bright note: I adjusted to the interferon pretty quickly. First few injections knocked me silly and pretty much shot the weekend, but after that it was barely noticeable. Maybe that's partly because the other symptoms/side effects were just gathering momentum, I dunno!! But, anyhow, I didn't have those "flu-like" symptoms after the first few IFN injections. I did get fairly regular fevers and retinal problems (bleeding) that really worried my doctor, also ended up in the ER with a urinary tract infection that was really bad. But after thinking about the alternatives, I was just determined to make it through the therapy. Another plus: time seems to go by pretty fast, so it didn't seem too long by the time I got to week 12. I think I just prepared myself for the worst mentally, so I ended up being a bit pleasantly surprised and thinking, "I can do this. I can make it through for 12 weeks [plus 12 more weeks of interferon and ribavirin]."

[dhwilkins]

I WENT TO WALGREENS AND THEY HAD SOME DISCOUNT PROGRAMS ALONG WITH THE PHARMACEUTICAL COMPANIES.  TRY THEM.

[Michaelrightnow]

I am wanting to get on this program...but how do I go about it? Do I just go to my doctor and say hey I need this stuff get me going? Have no ins so I need to find a way to get help somehow....any good advice on how to get started?

[sansgene]

Better, but not great!!!

[k1nstang]

I required 9 blood transfusions during my incevek treatments... scary but im 3 weeks away from my 1 year Hep C treatments...and i feel so much better...hopefully the end results means Hep C is history''
GOOD LUCK TO EVERYONE GOING THRU THIS...GOD IS GOOD.. IRENE

[mike1038]

I am doing the triple treatment I am now in week 14. I must say week 8 thru 12 was pretty bad but week 13 was the worst week of my life. Lots of itching upset stomach brain fog.  I think it was a week of withdrawal. Week 14 has been almost like I am not on treatment.

[dhwilkins]

Thought I would give an update on my husband.  He is over the Incivek and feels much better.  However, when he stopped the Incivek on July 6 - along with dehydration, he experienced A-fib on July 9 and had to be taken by ambulance to the hospital.  He NEVER has had any problem with his heart and we contribute it to the treatment with HepC.  However - the cardio dr didn't consult with the HepC doctor until the HepC doctor actually had to initiate the call.  Not pleased with the cardio  dr not considering the hepC treatment problems and prescribed 3 medicines to 'take care of the A-fib" problem.  We are waiting until the 4 wk cardio appt to encourage the cardio dr to wean my husband off the cardio meds.  So be prepared.....doctors don't necessarily like consulting with the doctor that knows what is going on!  The HepC dr even wondered why they put my husband on Amiodadrone.  But for those getting off the killer Incivek...there is light at the end of the tunnel........my husband started feeling better in one-two weeks after the last Incivek.  The peg intron still causes some discomfort the day after his injection...but each day is going up.  He will complete the meds on Sept 28...woohoo!

[hhh64]

one of the best ways to shrink the haemorrhoids is to invert your legs.  lie on the floor or the bed and swing your legs up the wall.  stay like this for about 10 minutes daily and you should see an improvement.  i an on week three of the incevik treatment and have developed haemorrhoids.  my background as a yoga teacher gives me lots of tools to deal with the side effects and i'm hoping that as i move forward in treatment i can maintain this focus.